Category Archives: Multi Organ

Dual live-donor transplant surgery conducted on 2-year-old – Times of India

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KOCHI: Grandmother donated her kidney and father donated his liver to save a two-year-old girl who weighed 7 kg, making her the smallest child in the world to have successfully undergone dual live-donor transplant.Doctors who performed the transplant at Aster Medcity said that the organ transplant manual states that a child should weigh at least 10kg for a transplant. Parvathy MS from Kodakara in Thrissur suffered from a rare congenital condition called primary hyperoxaluria type -1, in which the deficiency of a liver enzyme leads to abnormal spike in blood oxalate levels that permanently damage the kidneys.

“There is evidence of successful dual transplant being done on a child weighing 9 kg. But till date, no one has performed transplant on a child weighing 7 kg,” said Dr Mathew Jacob, consultant liver and abdominal multi-organ transplant surgeon, Aster Medcity.

However, the decision for transplant surgery was not immediate. “We wanted to wait till the child’s weight touched 10 kg. But when we realised that we would be risking her life if we waited, we discussed with the girl’s family and decided to go for transplant,” said Dr V Narayanan Unni, senior nephrologist, Aster Medcity.

Explaining their ordeal, Parvathy’s mother Saritha MS said that their daughter was first put on daily peritoneal dialysis when she was four months old. “The dialysis lasted for nearly 20 hours each day. After a year, she had to be put on ventilator and needed daily hemodialysis. But soon doctors said that transplant was the only option and they couldn’t wait longer,” said Saritha.

However, getting a donor, the baby’s size and age was not easy. Therefore, it was decided to take her grandmother’s kidney. But that had its own complications. While the adult kidney is nine and half to 11 cm, that of a child is 4 cm. Also almost half litre blood flows in the adult kidney in an hour, that’s the amount of blood flown in a child’s body. “The solution was to remove her damaged right kidney and place the new kidney. The blood volume in her kidney too had to be increased using highly specialised techniques,” added Dr Jacob.

“Post-transplant surgery in November 2016, the child was in the hospital for 51 days. She has recovered well and now weighs 10.4 kg,” said consultant paediatric intensivist Dr Rajappan Pillai.

Her grandmother, 53-yeear-old Sathi Raghavan added, “I told my son and daughter-in-law that I had to do this for my granddaughter. I am happy now as she able to move and breathe without much pain”.

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Boy has much to be thankful for after multi-organ transplant – WSPA.com

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LANCASTER, Pa. (WHTM) – Tony Forte was diagnosed at six days old with a rare disease that effects the digestive system.

He has never lived a normal life but things are looking up after receiving a multi-organ transplant back in late August.

Forte says he is grateful for a chance at a normal life.

“I am thankful for a new life,” Forte said. “I am grateful for the new things that I can do, and I am thankful for the new organs that I have.”

Tony received the organs after a 12-year-old boy died the day before he flew down to Miami for the transplant surgery. Tony says he does not know much about the boy.

“I know he was about my age,” Forte said. “I know we had the same blood type.”

Tony says that he will never drink or smoke when he gets older because he made a promise to take care of his new organs in honor of the boy who passed away.

Tony says this Thanksgiving will be much different compared to years past.

“I have no more food restrictions,” he said. “I am looking forward to turkey and mashed potatoes.”

Anyone interested in sending Tony their well wishes can mail cards to CB Smith Park & Campground, Site 44, 900 N. Flamingo Road, PemBroke Pines, FL, 33082.

Anyone who would like to make a donation to help Tony’s family with expenses should visit aftft.com or send funds by mail at the Antonio Forte Transplant Fund Trust, 2131 Fruitville Pike, Lancaster, PA, 17601.

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Boy Who Missed Pre-K Graduation for Transplant Gets Surprise Ceremony in Hospital – Inside Edition

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While getting a transplant was great news for this Massachusetts boy, he was sad to learn he’d be missing his pre-K graduation.

So when Lucas St. Onge’s teachers found out he’d be missing the ceremony for surgery, they brought the graduation to him.

Read: Girl With Down Syndrome Cannot Contain Her Joy When Boyfriend Gives Her A Promise Ring

For weeks, Lucas had been practicing singing songs and walking across the stage to prepare for his May graduation. But he’s been waiting for a transplant for even longer.

His mom Heather St. Onge told InsideEdition.com that she has known Lucas would have health problems since he was still in the womb, but never did she expect that her son would become the only child in the world with short bowel syndrome and severe combined immunodeficiency syndrome. 

At just 3 years old, Lucas was placed on the transplant list.

“Quite simply, he is a little miracle,” read a statement on a crowdfunding campaign in support of the family.

On Lucas’ 5th birthday, the news came that a donor became available and the boy would be scheduled to undergo a mulivisceral organ transplant surgery.

The St. Onge family was ecstatic, but Lucas was less excited to hear that as he was receiving a stomach, pancreas, small intestine, a spleen and liver, he would have to miss his pre-K graduation.

“The morning after he had a transplant, he said, ‘Mom, I can’t go to school today, my belly hurts,'” his mom Heather St. Onge said. “Then he woke up and said, ‘I have to go to school tomorrow, I have to go to my graduation.”

So she contacted his teacher, Laurie Archambault, and asked if she and Lucas could Facetime them at the graduation, and at least be able to see what was going on as the boy recovered in his hospital bed.

Instead, “Miss Laurie” from the Hellenic American Academy decided her student deserved better. After the ceremony, she and several other teachers paid Lucas a special visit in his hospital room to give the boy his own graduation.

St. Onge said the hospital donated balloons and a sign, and she dressed her son in a suit and tie. The teachers brought his graduation hat and diploma, and cheered as Miss. Laurie called his name.

“He was excited that his teachers were there,” St. Onge said. “It was perfect.”

Read: Cops Stand by Fallen Officer’s Son at Kindergarten Graduation: ‘We Were All Glad to Be There’

They spent the rest of the afternoon taking pictures in the park, and singing the songs Lucas had prepared for the big day.

Now, after the transplant, Lucas is spending the rest of his summer vacation recovering until he begins Kindergarten in the fall, even though Lucas would much rather spend his time at school. 

Watch: Retired Cop Attends College Graduation of Girl He Saved From Fire When She Was 5 Years Old

Osmond 10-year-old needs quadruple organ transplant – Norfolk Daily News

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OSMOND — Summer is rough for 10-year-old Danny Anderson.
It doesn’t seem like so long ago when he’d be outside all day long, splashing in the blow-up pool with his family’s German shepherd, Roxy.
That was before doctors shuffled him in and out of operating rooms so often that his mother, Mary Anderson, lost count of the surgeries. Before she and her three other sons learned to live at the hospital for more than a year.
Now, Danny gets dehydrated easily in the sun. He can’t run through sprinklers or take a dip in the pool because the catheter leading to his heart can’t get wet.
But the hot, hazy months also equate to more childhood accidents. Mary Anderson regrets that this statistic is good for her, as another family’s tragedy could save Danny.
This summer means waiting for “the call” from the University of Nebraska Medical Center saying they’re ready to give Danny a quadruple organ transplant.
When Danny was 4 years old, he stopped growing.
He’d been a fussy baby, so stiff that a geneticist thought he might have cerebral palsy. At a year old, he already had a gastronomy tube so he could receive nutrition straight to his stomach. Danny’s g-tube matched that of his older brother, Connor Anderson. A genetic syndrome made it so if either boy ate something, it could go down the wrong pipe and sit on their vocal chords or fall into their lungs.
Doctors had told Mary Anderson that Connor’s condition was so rare, it was as if she sneezed at the wrong time during pregnancy. It wouldn’t happen again, they told her. Family history didn’t point otherwise.
Yet Danny had inherited the condition, too, along with a series of other puzzling symptoms.
By the time he was nearly 5 years old in the summer of 2010, he weighed 24 pounds. Air was building up in his abdomen, so doctors switched it so he received total parenteral nutrition, a form of intravenous feeding.
He bounced from hospital to hospital to undergo tests, only becoming sicker. Infections plagued him, and he entered septic shock more than once.
“We still thought they’d be able to fix him,” Mary Anderson said. “We were still very naïve.”
Eventually, Danny was diagnosed with chronic intestinal pseudo-obstruction. His intestinal tract had problems contracting, making it so air and waste couldn’t get pushed through. While the rare condition appears in most people when they’re babies, doctors speculated being tube fed for most of his life cloaked Danny’s case.
The stagnancy also made it so his body would flood with bacteria, causing life-threatening infections. One of the greatest concerns were line infections, where microorganisms latched onto the catheter from which Danny received nutrition directly into his heart.
In May 2012, Danny was hospitalized for another line infection. But once it seemed as if he recovered, the family got the OK to go home to Osmond from the University of Nebraska Medical Center. Instead, they went only 30 minutes away to his grandmother’s house in Omaha. A few hours after being discharged, Danny began to complain that his stomach hurt.
Although discomfort was nothing new for Danny, Mary Anderson sensed something more serious was wrong. Danny and his mother raced back to the hospital, where he was rushed to the trauma center. His bowel had prolapsed, falling in on itself and twisting inside his body.
Surgeons removed more than half of Danny’s bowel, hoping that would solve the problem. Then, line infections struck Danny back to back and his condition worsened. By August, doctors listed him for a small bowel transplant.
“The call” came Nov. 9, 2012.
After receiving his new “tummy,” as his mother called it, Danny did OK at first. He remained in the hospital as he recovered from the standard challenges of an organ transplant and a couple of viruses.
Then six months later, his lymph nodes swelled like balloons. After weeks of tests and speculation, Danny was diagnosed with cancer. He had post-transplant lymphoproliferative disorder (PTLD), a complication suffered by around 2 percent of transplant patients.
As the doctors tried to treat Danny, he developed a severe allergic reaction to one of his medications. His skin began to peel so drastically, doctors considered putting him in a burn unit. To make matters worse, his body was rejecting the bowel transplant. Surgeons went in over and over again trying to cut out the pieces that were causing the rejection, but nothing worked. The PTLD lessened for a while but came back along with a virus as Danny’s immune system weakened from the treatment.
“He was dying pretty much,” Mary Anderson said.
Danny doesn’t remember most of the times when he was really sick. The medications knocked him out and clouded his memory. He has no recollection of the times his mother would run through the hospital as fast as she could to get outside and away from the room where he was trapped. He doesn’t remember the doctors removing his bowel and reconfiguring his anatomy to make up for its loss.
He knows he’s sick. He has to live it every day and sometimes wakes from nightmares in which he’s taken a turn for the worse.
But what he remembers most is the past two years, healing and growing up “relatively healthy,” mostly at home.
They call him “Super Danny.” Always have, ever since he was obsessed with the cartoon “Super Why” as a toddler.
He had a life-size cut-out of the Flash, his current favorite hero, during his transplant. His mom used to move it around, putting it in unexpected places to scare the nurses.
He got the chance to be a real hero, too. When he was 4 and getting sicker, his family took a trip to Disney World and he mostly slept. He got the chance to fight Darth Vader but “flipped out” and had to be grabbed off the stage before the battle could begin.
But he went back to the park on a Make-a-Wish trip in December 2014. He finished the job, dueling Darth Vader and some storm troopers twice.
“In the same day,” Danny said.
He’s always been high-spirited, ever since he was a baby. When he was younger, he had such difficulty with his speech that he just wouldn’t talk.
“He didn’t know how to say he was hurting so he would be rough,” Mary Anderson said.
The nurses tell her, though, that being ornery is good. It’s what’s kept Danny fighting.
He has big dreams, too. Even though he can’t eat, Danny aspires to be a chef. In the hospital, he’d get room service nearly every day, assembling tacos and chopping meat for chef’s salads.
When he was really sick, he’d want to make gingerbread houses. But as his mother started constructing them, he’d only watch for a little while before falling asleep.
“I became a gingerbread house expert,” she said. “We had quite the village. It was bad.”
But a healthier Danny has different concerns. Back home in Osmond, he squabbles with his brothers about sharing the Xbox.
The town is their home, Mary Anderson said. Despite Danny’s main hospital being UNMC in Omaha, she has no plans to move. Her other boys — Christopher, 18, Connor, 12, and Dillon, 8 — all have their friends there. And the school is small enough that Danny can attend on a specialized schedule and still stay with his class.
But life is far from normal. Every day, Danny spends 16 hours hooked up to intravenous nutrition. He drags the 3-liter bag around the house with his foot. The severe allergic reaction to his medicine caused his skin and eyes to become very sensitive, so he tends to wear sunglasses even while inside. Issues with the tubes and bags that vent air and liquid from his abdomen and the catheter in his heart land him in the hospital — but for far briefer stays than in the past.
His anatomy has been reassembled in such a bizarre way that most local doctors won’t touch him. During a recent surgery at UNMC, a doctor spent 15 minutes trying to find an organ before consulting an X-ray and figuring out everything was located “backwards.” There are mere inches of some organs left, including his stomach and colon.
The only real “fix” for Danny is a quadruple organ transplant. He needs a liver, small bowel, colon and pancreas, which he’s been listed for since September.
Even then, doctors tell Mary Anderson that Danny will only be trading one set of problems for another. He’ll need numerous types of medication each day, including drugs that repress his immune system so his body doesn’t reject the new organs.
Danny’s mom knows a lot of the medical terminology, throwing out phrases like PICC line, ileostomy and TPN with ease. When Danny was first getting sick, it helped her to go over all the charts and lab reports, to look at the situation clinically.
There’s no time for breakdowns. There’s no choice to be anything other than a mom, she said.
Before Danny was listed for another transplant, she considered going back to nursing school. But once she knew the call could come at any second, she decided to wait until Danny’s transplant to consider college. The anxiety was too much for her after a while, and she got a part-time job as an assistant manager at Family Dollar in town.
“It’s been more challenging, but it at least makes the time go by faster,” she said.
When the call comes, she’ll have to take at least six months off work, and that’s if it all goes smoothly.
Mary Anderson’s eldest son, Christopher, will help take care of his brothers when Danny gets his transplant. A recent high school graduate, Christopher plans to attend Northeast Community College so he can stay close to his family.
“He’s a huge help,” Mary Anderson said. “(Without him) I don’t know what we would’ve done.”
She’s also grateful for the nurses and doctors who have brought Danny to this point and the friends who have supported her.
If it all works out, Danny should one day match his brother and only have a g-tube in his belly. When this happens, his mother promises him they’ll go to a water park. Her hope is buoyed by the other children who have received the same transplant Danny is slated for and are leading fairly normal lives.
Danny’s especially fond of a 9-year-old girl named Emily Somerville who’s had the quadruple organ transplant he’s waiting for twice.
“I run the halls with my girlfriend,” Danny said, pleased to define their relationship. “Me and my girlfriend are troublemakers.”
They’re planning a wedding at the hospital on July 6. The officiant will be his favorite clown. Most of the nurses can come, too, except maybe the one who adores Danny too much.
“She’s out of my league,” he explained.
But the road ahead for “Super Danny” is long, and Mary Anderson doesn’t know if people realize that.
“You have this image … that you get the transplant and it’s done and everything is good and you go on your way,” she said. “It’s a lot more in-depth.”
Want to help?
Donations toward Danny’s transplant surgery can be made through the Children’s Organ Transplant Association (COTA) at bit.do/donateDannyA. Updates on Danny’s condition also can be found on Facebook on the page “Super Dannys New Tummy.”

5-year-old, 5-organ transplant boy regular kid – WTSP.com

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TAMPA — At three years old, Adonis Ortiz endured more than most people do in their entire lives.

Born with his organs outside of his body, Oritz underwent a first-of-its-kind successful 5-organ-transplant.

Now three years later and at 5 years old, he’s opening up to 10News WTSP for the first time.

At first glance, 5-year-old Adonis Ortiz is a little shy.

You can’t blame him. For almost half of his life, he’s had to deal with this.

The huge scar you see from his pelvis to his sternum marks a miracle.

It’s where doctors — in a one-of-a-kind procedure — successfully transplanted five organs into a child.

“I call him my little Superman,” said Ortiz’ mother, Aracelis.

For her, the recovery hasn’t been easy.

“They will look perfectly fine with smiles on their face and then BOOM. They’re on the floor,” she said. “If he starts running a fever, it’s like OK, is it the organs? Or is it a cold?”

But spend a little time with Adonis and you’ll see. He’s just like any other kid who loves to play, and has a mom who adores him.

“I love looking at him,” Aracelis said as her son played with his Legos.

 

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The Ortiz family brought us into Adonis’ room.

“Adoni, what’s your favorite food?” Aracelis asked. “Sweet potato!” he replied. “With what?” she asked. “Mango!” he said with a giggle.

Like a lot of kids, Adonis wants to be in the FBI.

It only took a few minutes of us entering his room for him to get dressed in his police uniform.

“Is mommy under arrest?” Aracelis asked her son as he placed play handcuffs on her.

“Yeah!” Adonis replied.

“Where am I going?”

“To jail!”
And he already knows how to do way more than most.

“Here. You want to put it on?” Aracelis asked her son as she passed her 5-year-old a plastic baggie. It’s for the machine that gives Adonis milk through the tube still connected to him. At five, he knows how to prepare and operate the medical device.

It’s another sign Adonis is growing up. But even that is a challenge.

 

“You know your kid’s growing and they’ll have like some growing pains, but they’re not having that stretching pain of all the scars,” Aracelis said.

When those scars hurt, Adonis hugs his bear, Buddy.

“Why do you like Buddy, Adoni?” Aracelis asked.

“He’s my favorite . … I love him!”

On the door to his room, you can see the measurements Aracelis has taken of her son as he’s grown. They’re marked in blue, black, and red pen.

It shows how tiny Adonis was four days before the transplant.

Since then the Ortiz family has celebrated so many firsts.

Two years ago, Adonis came home for the first time.

Just last year he had his first day of school.

And in the last month, he’s had his first milkshake, he went into the Gulf, and he’s just now talked to us.

Aracelis says for other parents, “It’s kind of like, oh, it’s just tomorrow … but, for us, it’s like … it’s tomorrow.

 

Tomorrow is a brand new day that you’re still here, that you’re not in the hospital, that you’re not getting surgery, that you’re not getting poked and prodded and tortured all day long, so it’s like, yeah. What DO you want to do tomorrow?”

To learn more about Adonis’ condition you can head to http://averysangels.org/.

San Benito boy recovering after rare eight-organ transplant surgery – KGBT-TV

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A San Benito boy is recovering from a rare eight-organ transplant procedure in Florida.

On February 23, Liam Garza successfully underwent a nine-hour transplant surgery, receiving eight new organs: a liver, stomach, large and small bowel, pancreas, two kidneys, and bladder.

When Liam was born his family realized he had Megacystis Microcolon Intestinal Hypoperistalsis Syndrome — sometimes called Berdon Syndrome. According to the Jackson Health System, it’s a rare prenatal condition involving a dilated urinary bladder, which causes massive abdominal distension, microcolon, and decreased or absent intestinal function.

“He was just a three-month-old baby from Arkansas and his parents decided to donate his organs after losing their loved one. My family and I will never be able to pay them back for this gift of life they gave my son,” said Liam’s mother, Julissa Cerda.

Liam isn’t the first member of the Garza family who needed transplant surgery. Five years ago, transplant surgeons from the University of Miami Health System saved the life of their daughter Delilah Valdez.

In 2011, Delilah received a seven-organ transplant by surgeons at Holtz Children’s Hospital, which is part of the University of Miami/Jackson Memorial Medical Center.

“Even at the hard tough moments we’ve had, the only choice we had is to stay strong and to stay positive for our children,” Cerda said.

Eight-organ transplant saves life of Texas toddler in Miami – Miami Herald

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Five years ago, Julissa Cerda brought her infant daughter from the Rio Grande Valley in Texas to the Miami Transplant Institute so that surgeons could save the girl’s life from a rare and fatal congenital disease that would not allow her to digest food.

The multi-organ transplant surgery was a success. So when her second child also was diagnosed with Berdon syndrome last year, Cerda returned to Miami for surgeons with the University of Miami Health System to save the life of her infant son.

“It didn’t make it any easier to have to do it twice,” Cerda said Friday from the room at Jackson Memorial Hospital where her 1-year-old son, Liam, is recovering from the first eight-organ transplant performed in Florida.

“As a parent, it’s very hard,” she said. “But I stay strong for both of them. They’re the ones going through it. I’m just the support system.”

For this syndrome, organ transplant is the only cure.

Dr. Jennifer Garcia, UHealth pediatric gastroenterologist

About one in a million babies are born with Berdon syndrome, said Jennifer Garcia, a UHealth pediatric gastroenterologist who provides care for Liam and his older sister, Delilah, 6.

Most babies diagnosed with the rare disease, which afflicts the muscles of the bladder and bowels and makes it impossible to hold down food, do not live more than a year without treatment.

“For this syndrome,” Garcia said, “organ transplant is the only cure.”

In 2011, Delilah required seven new organs. Liam needed eight — a liver, stomach, large and small intestine, pancreas, two kidneys and a bladder.

The nine-hour surgery was performed on Feb. 23, about three weeks after Liam was first placed on an organ transplant waiting list, Cerda said.

For Cerda and her family, including Liam’s father, Jose Garza, the uncertainty of finding a matching donor — and the boy’s deteriorating health — made the wait nearly unbearable. The family traveled to Miami in January to prepare for transplant surgery.

According to the Department of Health and Human Services, one organ donor can save up to eight lives. April is National Donate Life Month.

“The doctors didn’t guarantee us he was going to make it because he was so ill,” Cerda said.

Prior to the surgery, Liam had been fed his entire life through an intravenous tube inserted into a large blood vessel in his chest. The liquid nutrition kept the boy alive, Garcia said, but it also led to complications, including liver failure.

Now, several weeks after the surgery, Liam has begun to eat solid foods, including carrots, peas and bananas.

“It’s like feeding a newborn,” Cerda said. “We’re teaching him how to eat, but he’s doing amazingly well.”

Liam, who has not left a hospital since he was born, celebrated his first birthday on Feb. 17 at Jackson Memorial.

Cerda said she expects to take Liam home in about four weeks following outpatient therapy in Miami.

“He needs to be medically stable,” she said, “and to make sure there’s no rejection in his organs.”

121,259 People waiting for an organ in the U.S.

Like his sister Delilah, Liam will require a lifetime of care, including anti-rejection medicine and regular consultations with a doctor, Garcia said.

But she added that his outlook for leading a normal life is good and getting better. She noted that a woman who received an intestinal transplant at Jackson Memorial in her teens recently gave birth to her second child.

“Outcomes from intestinal transplant have really improved over the last 20 years,” Garcia said. “The one-year survival is about 90 percent for pediatrics. The five-year survival rate is about 70 to 80 percent. And once you get past five years, it plateaus and stays at 70 to 80 percent.”

Young sisters poisoned by chocolate to enjoy first ever Easter eggs after double organ transplant – Mirror.co.uk

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Mirror.co.uk

Young sisters poisoned by chocolate to enjoy first ever Easter eggs after double organ transplant
Mirror.co.uk
Brave sisters Nicole and Lola Raine can finally enjoy the chocolate that would have once poisoned them. They both suffered from a rare kidney and liver disease which meant chocolate was off-limits, the Birmingham Mail reports. But now they can both

and more »

Houston girl waits 7 years for organ transplant – KPRC Houston

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Photo courtesy of GoFundMe page.

HOUSTON – A Houston girl has a bright future ahead of her after waiting seven years for an organ transplant.

Joey Knott was born with Berdon syndrome, also known as MMIHS.

“It’s a fancy word for saying she has a giant bladder and very little intestine and she’s unable to digest or move her food,” said Cat Kennedy, Joey’s mother.

She said when Joey was born, doctors said she didn’t stand a chance.

“One morning I came in and she had been unplugged from all of her machines and there was a hospice worker waiting for me,” Kennedy said.

But Kennedy refused to give up. For the first seven years of her life Joey couldn’t eat solid food and she spent most of her days in and out of hospitals, waiting for the organs she needs to survive.

“We had a couple calls from the donor list, but all of them fell through,” Kennedy said.

Finally in December 2014, they got the call they had been waiting for. “Joey was so excited!”

They flew from Texas to Ohio, where Joey basically received a new digestive system from a little girl who died in Tennessee.

“I have no words,” Kennedy said. “I don’t even know what I could say to the family who made such a huge sacrifice for us.”

Life post-transplant has not been easy. For the first year Joey was in and out of the hospital with infections. She also has to wear a mask almost all day because of a weak immune system. She has to carry a backpack with her to keep her hydrated.

“But she’s a tough little girl and every single one of these infections, every single one of these hospitalizations, she fights it to get back home so she can go out and play,” Kennedy said.

Most recently Joey has been doing well, having fun being her energetic self. It’s all thanks to one family who decided to make a life-saving decision.

“You’re not only giving a person a new lease on life, you’re giving a family a new lease on life,” Kennedy said.

To help fund Joey’s medical expenses, check out her GoFundMe page.

2016 Click2Houston/KPRC2

Pineville girl waiting on second organ transplant turns 10 – The Daily Advertiser

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Kylie Walleser-Bush made it to double digits on Feb. 10.

“To her, it’s just another birthday, but to us, it’s ‘Thank goodness, another birthday,’” her mom Joan Walleser said.

The Pineville girl is waiting on a multi-organ transplant to give her a small intestine, a liver and pancreas. At just 10 years old, she’s been down this road before.

Kylie was born with malrotation and volvulus, which caused her to lose her small intestine and develop short gut syndrome. She was 17 months old at the time of her first life-saving small bowel transplant. But her body rejected it, which called for removal surgery in 2010.

Birthdays are a big deal to Kylie’s family — and rightfully so.

“We tend to celebrate those milestones big, because we don’t know if we’re promised a prom or a graduation,” Walleser said. “So we celebrate the here and now.”

Memories of past birthdays aren’t so much tainted by the child’s medical history. They are all the more special because of it.

Kylie spent the first half of her second birthday in a Shreveport hospital. She was life-flighted later in the day to Omaha, Nebraska, for medical treatment. She had the flu.

“It just shows how fragile she is even post-transplant,” Walleser said.

Her second birthday party ended up being six months late. But it didn’t matter.

“She needed a party to celebrate,” Walleser told The Town Talk in August of 2008 — and she got one.

“I don’t know how long I have with her,” Walleser said on the day of that party. “But I hope it is many years.”

The mother’s tune is the same today as she looks to next February.

“I hope it’s post-transplant, and we’re celebrating, doing whatever 11-year-olds do,” she said.

This year, Kylie requested a party at Skateville in Pineville. Walleser asked if she remembered how to roller skate. It’s been awhile. Kylie reminded mom she’s older now.

“Now, I can do it without holding anybody’s hand,” she said.

Walleser won’t be surprised if that’s the case. Well, she might be. But Kylie surprising her is nothing new.

In the past two months Kylie has had two surgeries and been hospitalized four times. The last time was two weeks ago. Because of that she was scheduled to make up tests at J. I. Barron Elementary on her birthday. Walleser phoned her teachers that morning because she didn’t think it would happen. Kylie was having a bad morning and tied down to an IV.

But by the afternoon the 10-year-old perked up and wanted to go take her tests. She did and made A’s.

“Even as sick as she is, she still pulls off mostly A’s,” Walleser said. “Her mind is sharp, sharp. But her little body is getting tired.”

Her transplant team knows that her condition is very critical, Walleser said. Kylie is moving up on the waiting list each time she’s hospitalized.

“So we’re just hoping for the call,” she said — and trying not to make that the entire focus of Kylie’s birthday week.

“We’re just celebrating,” Walleser said. “Because we know the medical stuff is coming.”

Kylie’s answers to what her plans are this coming year reflected that. She wants to try out for the cheerleading squad at school and see Disney on Ice, a birthday gift from her big brother and sister-in-law.

“And I can’t wait to have my own car,” she said.

Walleser laughed and said that’s probably not in the cards for her this year.

Kylie turns serious for a minute talking about her first accomplishment as a 10-year-old: singing in her school’s talent show Friday morning. Her song of choice? Fight Song by Rachel Platten.

Mom proudly produces her iPad recording of the performance. As Kylie gets to the end of the chorus, which goes “I’ve still got a lot of fight left in me,” Walleser notes the crowd’s reaction.

“She had a lot of people in tears,” she said.

The upbeat pop song released last year became a favorite of Kylie’s. Her response as to why depends on who she’s talking to.

“Sometimes, she’s just like ‘I just like it. It’s my favorite song,’” Walleser said.

Her response while being interviewed was candid.

“Cause I’m fighting for my life,” she replied.

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